The Broken Family Tree / How Bea Gorman's sad family history of Alzheimer's provides researchers with fodder for years of work

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The musical trill of her cell phone sounds in mid-bite as Bea Gorman sits at a waffle house in Sacramento. She shrugs and reaches for it, a 69-year- old grandmother from Lodi who, like the rest of the world, answers her phone wherever she is. She's barely touched her turkey sandwich, a late lunch squeezed between a meeting and a benefit set to start in a few hours.

"Alzheimer's Aid Society," she says in a businesslike voice into the small phone, which she keeps on a leash attached to her key chain. This time it's her husband checking in before he visits a nearby nursing home, but it could have been anyone, which is why she answers no matter where she is, from early morning until she goes to bed. She can't predict when someone will have a crisis or just want to talk about the symptoms that Gorman knows only too well.

As a young girl in Kansas City she watched her mother fade away from a baffling illness. Her father, a painter and paper hanger, kept taking his wife to doctors, but no one knew why she got lost on the bus or forgot simple details. No one mentioned Alzheimer's disease. Few people had even heard of it. And certainly no one talked about it striking at such a young age. Her mother was only in her 40s. She should have been happily taking care of her kids. Instead, while Gorman's friends played outside, she sat with her mother each day after school, spooning pureed food into her mouth. Her mother, whose blank eyes had stopped recognizing her own children, would stare past her sad daughter.

Her mother died at 52 of what doctors finally said was "re-senile dementia." Gorman was 13, the youngest of nine children and the one who eventually would write a book about what happened during the next few decades as first one, then three other siblings died young from Alzheimer's disease. She became not only the family archivist, but also a pioneer who pushed for research on genetic links to the disease, an area that now has become the forefront in the battle against Alzheimer's. She and her husband met with researchers and legislators and founded the Alzheimer's Aid Society of Northern California, a nonprofit to support research and give support and information about the disease.

It was a path she chose out of necessity, she said, not one that anyone would have predicted. She'd been a shy girl who dropped out of school after ninth grade, met her husband at age 15 and married him three years later, then had four children and became, as she says, "a Susie Homemaker type." She'd never spoken in public or written a business letter when, in her 40s, she found herself stuck in a reality she could no longer ignore -- the disease that erased her mother's mind could strike her.

"I was so worried and so guilty that I might have passed it on," she said, arms folded on the table at the restaurant. There is still a sadness in her demeanor. She's been told she looks like her mother, with the same eyes and high cheekbones, but she hopes the resemblance does not extend to brain chemistry. A tidy-looking woman with short light brown hair, she has already lived more than 15 years longer than her mother did.

There was a long time when she felt alone with her fear. Doctors thought Alzheimer's was rare and no one, it seemed, was talking about the disease first described in 1906 by German doctor Alois Alzheimer. The illness became his namesake after he presented, at a medical meeting, the curious brain disorder of a 51-year-old woman who'd described her condition simply: "I've lost myself." An autopsy of her brain showed the lesions that today are known to be characteristic of the degenerative disorder that results in death of brain cells, with loss of memory, language skills and behavior changes

The next 70 years yielded scant more understanding of the disease. "In the mid to late '70s, no one had heard of Alzheimer's," said Dr. Robert Cook- Deegan, who took a family history of Gorman when he was a young medical student and is now head of the Center for Genome Ethics, Law and Policy at Duke University. "Alzheimer's was not a household word like it is now. There was no Alzheimer's Association. The most famous textbook of the time said it was not genetic."

Researchers now know there are at least two kinds of Alzheimer's -- familial, which accounts for less than10 percent of cases and typically strikes in middle age, and sporadic, which occurs later in life. Both forms involve degeneration of the specialized neurons that make the essential neurotransmitter acetylcholine. Without this substance, brain cells lose their connectivity and portions of the brain appear to shrink and decay. The big question still remains: What causes the chain of events to begin? Scientists think age, genetic mutations, brain injuries and environmental factors might all be triggers, but have no firm answers.

But their investigation has taken on a new urgency as the Baby Boomer generation charges toward old age. The U.S. Census Bureau predicts the number of Americans 65 and older in the year 2030 will be more than double what it was in 2000, and more people than ever are expected to live into their 80s. One scary statistic looms: 47 percent of those now 85 or older suffer from Alzheimer's, making it the leading age-related dementia. The disease, which now afflicts 5.8 million Americans, could affect as many as 16 million by midcentury. So the boomers, once focused on ways to make their babies smarter, now want to know how to keep their own minds intact.

Siblings often create a collective memory. What one doesn't know, the others supply. Gorman had to rely on her brothers and sisters for any recollection of her mother as a healthy woman. They told her about the beautiful woman with a perfect olive complexion and the warmth and determination that kept the family together. What Gorman remembers is a tired, gray-haired woman who had no energy to cook dinner or take care of her. She remembers walking home and looking in windows at other people having dinner together and thinking how, one day, that was what she'd like.

"She was more like a grandmother to me than a mama," said Gorman, in an interview recently in her organization's Sacramento office.

Gorman watched her mother change from a quiet uncomplaining presence to an invalid. Once, while visiting one of her children in the hospital who was having her tonsils out, Gorman's mother wanted to phone her husband but forgot the number. Then, later, she forgot how to transfer on the bus. Her husband began cooking for the kids -- usually beans -- or they fended for themselves.

Finally, her father took his wife to the hospital for tests. "I hope they find out what's wrong with me," is the last thing Gorman remembers her saying. No one is certain what went wrong at the hospital, but Gorman's mother returned home in an ambulance, unable to walk or talk. Today, Gorman wonders if it was the tests or just the abrupt change in her routine that precipitated the drastic decline. She will never know for sure.

The kids took care of Gorman's mother when she came home. She recalls her father cutting off her mother's long dark hair so it would be easier to brush and wash. Her mother didn't want to eat, but Gorman had the job of feeding her, sometimes sneaking bites herself to make the job go faster. When she stopped eating, Gorman's father put her in a county home. She died three weeks later. Gorman's only memory of her mother looking beautiful was in the casket, dressed in lavender, her face free of the blank, haunted look of Alzheimer's.

She dropped out of school after ninth grade, and by age 15, she was living in an apartment with her best friend and working to support herself. She met John Gorman at a skating rink. He came from a close-knit Croatian family that had everything hers lacked. The Gormans celebrated birthdays and holidays and weddings. The two married when she was 18 and John was 19. He completed two years of college, hoping to become a pharmacist, but left to join his family in the grocery business. They lived for a time in Colorado, where John managed a family-owned store and then in South Lake Tahoe, where he found a job at a large supermarket.

She didn't hear the word Alzheimer's until her oldest brother Herschel was diagnosed with it in his 40s. A painter and carpenter like her father, he'd started forgetting to show up for work. When he did show up, he forgot what he was supposed to do. Finally, Gorman suggested to his wife that Herschel come for a visit. To her, it was obvious Herschel was sick. He couldn't carry on a conversation. He would disappear and rummage in drawers, leaving the contents strewn around the room. When he returned home to California, doctors diagnosed Alzheimer's. He continued to decline and eventually was placed in Napa State Hospital, where he died at age 54.

Soon Gorman's sister Minnie Sue had the disease, then her brother Leonard and her sister Norma Jean. Gorman felt overwhelmed. John worked long hours and was often gone, leaving her to take care of their four kids. The Tahoe winters seemed unbearable. She was almost 40, close to the age when her siblings got sick, when she started to think about suicide. She fantasized driving her car off a road to escape what she feared was inevitable -- that she would get Alzheimer's.

In desperation, she started looking for answers. She threw herself into research, writing to county record clerks, visiting libraries and relatives. She traced her newfound sense of purpose to a renewed faith in God. Whatever, the reason, she followed it with an increasing sense that time was running out. She had to have an answer before the disease got her. As a first step, she went to see a doctor in Tahoe.

"He didn't tell me anything," she recalled. "He just took a book off his shelf and read a sentence on Alzheimer's. Then he said, 'That will cost you $35.' "

So she wrote to the famous Mayo Clinic. A doctor there -- she still has the letter -- responded that Alzheimer's occasionally ran in families, but was difficult to detect and impossible to prevent. Undaunted, she wrote to university hospitals. A neurologist at the University of Colorado who was studying familial links to Alzheimer's finally invited her to visit. Researchers there reviewed her family history and tested her for the first time.

"I had the incredible job of trying to put together family trees," said Dr. Cook-Deegan, who remembers talking to Gorman all those years ago when he was a medical student. "The sad thing is that there are so many stories like hers out there but we don't hear them. She was very persistent. You have a choice when something terrible happens to you. One choice is to channel it into something productive. Bea is one of those breed. She was one of those people who are a force in supporting medical research, in making something happen."

Gorman continued to corner experts are meetings, to contact research centers and to be tested herself. She volunteered in so many studies that she once ran into a researcher at a conference who commented, "You're Bea Gorman? We're growing your cells in my lab."

The one thing she declined was genetic testing. "I don't want to do it," she said. "I have a tendency to get depressed. I think it would do me in. The kids don't want to take it either. They're scared to death." By the time the test became available, she said, she was past the age of early-onset Alzheimer's. And even if she had a genetic mutation, that didn't mean she'd get Alzheimer's. She knew a woman in New York who got the test, agonized about the positive results, then developed the disease. It would be better to live her life without knowing, she decided. Still, that has not made it easier to accept why some got it and she did not. "It's just a toss of the coin," she says.

She and John founded the Alzheimer's Aid Society of Northern California in 1980, which now has offices in their hometown of Lodi, in Modesto and in Sacramento and is funded by donations and memorial gifts. Then, about 10 years ago, she worked with writer Lois Bristow on her own story. Using a family history that one doctor had labeled "Bea's manuscript," she documented how Alzheimer's had decimated her family. The two spent days locked up in a motel room in Southern California poring over her life. "Will I Be Next? The Terror of Living with Familial Alzheimer's Disease" is a self-published book that has been widely circulated among those looking for information about Alzheimer's.

"She pushed hard to get research in this area," said Dr. William Jagust, a professor of health and public policy at UC Berkeley, who met Gorman when he was at UC Davis' Alzheimer research center. "The whole issue of genetics of familial Alzheimer's is something that blew the field right open. By gaining insight into it, we gained insight into nonfamilial forms."

Researchers have found mutations on three genes believed to cause early- onset Alzheimer's and are investigating whether others are responsible for triggering the more common form of the disease. Genetic research in that area continues while scientists work on other avenues -- in prevention and treatment. One major aim, experts say, is to be able to detect the disease before it causes significant brain damage. Scientists have made huge leaps in what they know about brain pathology, advances that coincide with invention of devices that allow doctors to look inside the body, point by point. Dr. Michael Greicius, medical director of the Stanford Memory Clinic, is working on one technique, for example, to examine how specific portions of the brain change over time. Instead of using regular magnetic resonance imaging, he is experimenting with what's called a functional MRI, which can be performed on elderly people who might have trouble performing complicated tasks -- such as pushing buttons -- while they lie in a scanning tube. The functional MRI works by examining the brain at rest, measuring cell-to-cell networking in portions affected by Alzheimer's. Screening for early stage disease is deemed essential because, at least for now, once the plaques and tangles of Alzheimer's clog the brain, nothing can be done to repair the damage.

Researchers hope, though, to find new drugs that will halt or delay progress of the disease or a vaccine to prevent it. One vaccine trial was halted when it caused cases of encephalitis, but researchers are still working to formulate one that will work. Drugs that attack the disease; by preventing the buildup of plaque caused by toxic proteins called beta-amyloids, or that treat symptoms; by blocking the breakdown of the brain chemical acetylcholine, are being studied eagerly. Medicine that keeps the level of neurotransmitters high, even though cells that produce it are dying, have shown promise in people with mild brain damage, but appear to work for only a few years, doctors say. Researchers also are looking to see if cholesterol-lowering drugs and blood pressure medicines help fight the disease.

In a different realm, some scientists think gene therapy or stem cell research will provide answers. One study in Southern California is experimenting with delivering human growth factor into regions of the brain where neurons are degenerating in the hope of preventing cell death and atrophy. Advocates of stem cell research -- among them former first lady Nancy Reagan -- believe it might yield treatments for Alzheimer's, but the field is the subject of contentious debate.

Whatever treatments do emerge will be too late for much of Gorman's family. She already has buried a niece, who shares a Kansas City grave site with Gorman's sister and mother. And recently she's been worried about another niece, the child of one of her brothers. She hopes research might help her children or theirs. Dr. Greicius said there is reason for optimism.

"Of course, people who have been in practice for a long time have seen hopes dashed," he said. "Expectations came and went, but I would be pretty surprised if in 10 years we didn't have a curative or preventive treatment. The race is on."